Thank you for your consideration.... scary symptoms.

DanielleS

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Hello. I am a 44 year old woman. I was healthy until oct 2019, when I started to feel a weird un-wellness. A month later, my left foot began to feel odd pinky, and my pinky toe began to twitch. I also awoke to my middle finger on my right hand, completely numb. Over the past year and a half I have been experiencing many concerning symptoms. My twitches spread all over. My entire left side of my body feels "off". Some days I'm very off-balance, and walk like I'm drunk. Like I have no center of gravity. My jaw is tight and sometimes tingly. My joints all feel very loose, especially knees. When I step down on my right foot it feels like it sends quakes up my whole body. In the past month my voice is strained and I sometimes struggle to pronounce a word clearly. Now my knees seem to be loosing muscle (both sides getting very bony) and my forearms are losing bulk too.

I have seen 2 neurologists, with normal exams. One said its BFS & essential tremors. (Oh yeah... I have hand and neck tremors btw) I haven't had any follow up visits since my balance or voice issues. I have had MRIs that were unremarkable. I also had a 1:1280 ANA in dec 2019.

Can anyone reading this offer me any insight? I have gotten use to the twitches, although they still concern me. But its really all the other stuff scaring me to death. Also my tongue has started to look scalloped, whereas it never did before.

Thank you for your energy. ♡
 

lgelb

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I think you have something going on, but not ALS. Also, there can be more than one problem at a time. For example, it would not be strange to feel anxious about your health. So it's always worth sorting that separately given what we know about how the mind affects physical wellbeing.

I would go back to your internist, get new labs, get your strength, speech, balance and flexibility baselined, and so forth. S/he can then refer you out to the most appropriate place, including, potentially, a rheumatologist and/or infectious disease specialist.

Best,
Laurie
 

DanielleS

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Thank you Laurie. I have been to a rheumatologist and had a full work up. Only the ANA was positive. She put me on Plaquenil. I haven't noticed any changes though. I appreciate your time.
 

lgelb

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Um, what condition is the Plaquenil supposed to be treating? It's not exactly warm coffee, so I would want a real value proposition for that.
 

DanielleS

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My Rheumatologist suspects inflammatory arthritis, and prescribed the Plaquenil hoping it would calm my immune system. I have an emerging symptom that I'm worried about. Both of my knees ache, feel cold inside and to the touch, burn sometimes, and have lost a considerable amount of bulk. I dont know if its muscle, fat, tissue, or what.... but over the past few months they have gotten very bony and kind of shaky and weak. I haven't fallen or anything. Does this, paired with the 1.5 years of muscle twitching sound like I should head back to the neurologist for another ALS exam? It is causing me to walk weird and have tight muscles, especially in my left thigh. Thanks for your consideration.
 

lgelb

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Maybe it's time to get a second rheumatology opinion. I'd think about that ahead of going back to the neuro. ALS doesn't present in the knees, or as you describe.
 

DanielleS

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Thank you. I made a rheumatologist appt next Friday.
 
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